Yesterday was horrendous to get through. My pain was almost always an 8 to 9 out of 10. It was SO bad I reminded me of my periods during my 20s. HORRENDOUS. In a ball, crying, and couldn’t find any relief in any position. I barely got five hours of sleep last night, but I’m at work today with my pain down in the 4-level. I can do this.
I met with my gyno/surgeon yesterday to discuss my recent ultrasound: my left cyst is shrinking! It’s down from a 2.3cm to a 1.2cm. Both he and the radiologist feel it’s a simple cyst that is resolving itself. No more need for another ultrasound in two months! YAY!
My explosive pain on Day One of my period yesterday was met with options. He cannot prescribe Tramadol (which is the only thing that works for me when Naproxen doesn’t) because it’s an opioid. So, back to those options:
Lupron Depot: no
Birth control pills: no
Depo Provera: no
Acupuncture: I can’t afford it
Pelvic floor therapy: I can’t afford it
Pain Management doctor: yes
So, the plan: Get the referral to a pain management doctor (he recommended one and I already emailed my PCP for the referral) and see how that goes. Head on back to Dr. Kurtulus in February to discuss how things are going.
If still desired at that time, discuss another excision surgery and a hysterectomy to remove at least the cervix and uterus (they still suspect I have Adenomyosis), leave both ovaries if both can remain; remove one if one appears it needs to be removed. And excise any Endometriosis he may find, as well as adhesions an restore anatomy to its rightful place.
I was in so much pain in the appointment that I just cried. I felt like such a boob.
Today’s pain levels are much more manageable. And I just received word that this Friday’s colonoscopy is approved by my insurance, so I’m glad I didn’t take any NSAIDs yesterday.
Having a plan, even one that is so far in advance, helps with the mental aspects of coping. And I’m grateful for even that much. And thank you to everyone for your support yesterday!
PS – I love my doctor and his staff. Even though I wasn’t in my best mood and form, they were all so super supportive and positive and loving.
I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.
As usual, this isn’t meant to scare you. Just inform you…
As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!
T.E. was diagnosed with Endometriosis when she was 28 years old. Now 31, she shares her story with us:
T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.
Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!
I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today. Wishing you the BEST of luck with acupuncture!! You are a beautiful, brave, and strong woman. Thank you!!!
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.
One of our readers, Jocelyn, emailed me this question:
Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!
One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?” So, here I go off to learn things and hopefully share a bit of that newfound knowledge. And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).
Where’s the Pudendal Nerve?
The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas. There’s two: a right and a left pudendal nerve. One or both pudendal nerves may cause issues, which we’ll get into right now!
Here I go again, once more intrigued by Endometriosis growing in odd places inside the body. Today I’m going to focus on the appendix. I’ve read that many Warriors have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis. But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.
Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo. Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery. Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix. But…knowledge is power.
Patricia was only 16 years old when she was diagnosed with Endometriosis. Now 42, she lives in Montreal, and tells her tale now. It includes a progressively worsening diagnosis, a full hysterectomy, ongoing medical treatment, and 32 surgeries! Despite her medical efforts and treatment, she continues to suffer with the illness.
Patricia’s Journey: I was diagnosed with endometriosis at the age of 16. It wasn’t too bad at that point, but between the age of 16 to 21 it went to stage 4. So it was decided at the age of 21 to have a full hysterectomy, thinking it would be a cure. I also had tried all the medications that were available at the time to treat it. Nothing worked not even the full hysterectomy.
Living in Barbados, Katrina was 29 when she was diagnosed with Endometriosis. Today she’s 34 years old and shares her Journey with us. She truly is a Warrior!
Katrina’s Journey: Life started out normal like any teenager but it soon came to an abrupt hault when I started to mature a bit more then the pains associated with my period was terrifying on the onset of my menstruation. As I grew older the pain got worse at age I was hospitalized for a low blood count due to the amount of blood I had lost in that one cycle it was terrifying.
MB was 20 when she was diagnosed. Now 29 and living in Alabama…her pain is back and she’s not sure how to move forward.
MB’s Journey: I had a baby when I was 18. I got married at 19 and then 6 months later started having bad pains so I saw the gynecologist. She did an ultrasound and test and it was a holiday weekend. They called the end of that day saying there was a mass in my uterus and I need to see the doctor after the holiday. That’s it.